USA: News from #MEAction

ME Action put out this newsletter yesterday:

https://mailchi.mp/meaction/why-the-press-wants-to-talk-with-meaction
Our staff has spent hours educating journalists about ME and infection-associated diseases in general through a range of topics ranging from research funding for Long COVID; to why viruses can trigger EDS or make it worse; and how the presidential candidates are ignoring the disability community.
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National Geographic wrote an excellent article about why infections, like COVID-19, can trigger or worsen EDS, as infections can damage connective tissue. #MEAction’s Jaime Seltzer spoke with the reporter about the science behind this, as many people living with ME also have EDS.
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“The viruses themselves will make collagenase, which is the enzyme that breaks down collagen. There’s the potential for [someone with a collagen disorder] to be more susceptible to an infection-associated chronic illness.”

- Jaime Seltzer, #MEAction Scientific Director
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Needless to say this is gibberish. Most forms of EDS are Mendelian. And regardless of whether you think that polygenic hypermobility should be classified as EDS III or not there is also no evidence of viruses causing or worsening EDS in this way. And, finally, it is simply wrong: viruses can't make collagenases.

(Yes, some viruses like HIV can alter host expression of various different matrix metalloproteinases, and cytokine release can also result in the upregulation of various MMPs. Some bacteria can make collagenases, although viruses can't. But all of that is a long way from "trigger EDS".)

Getting nonsense into National Geographic is not something to be proud of. Is there an advocacy organisation or charity that does have sensible views these days?
 
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Trish said:
Presumably they are citing some research, not just quoting Jaime Seltzer.
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There is no research worthy of that name. They are citing Seltzer along with the hypermobility crowd like Jessica Eccles, Linda Bluestein, and some hunky physios. It is just the same old song.

It has infected the highest ivory towers of Mayo, Harvard, Sheffield, Brighton, Wimple Street...
 
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Nightsong said:
Is there an advocacy organisation or charity that does have sensible views these days?
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It's a mess, isn't it. Specially as the medical professionals charities call on to talk to the media also have a tendency to make it up as they go along. They seem to think they have to talk up their 'expertise' in ME/CFS in order to justify holding the mic.

It's really frustrating when there are plenty of stories and angles that are compelling enough on their own.
 
From #MEAction:
A Very Modified Movement Class on 11/15

https://www.meaction.net/2024/11/01/a-very-modified-movement-class-on-11-15/
MEAction website said:
Join #MEAction for our final very modified movement class of the year on Friday, November 15th at 11am PST/2pm EST/7pm GMT.

This class has been crafted specifically for people with ME. This 30 minute class will be hosted virtually. We are, once again, thrilled to partner with Shannon Williams-Bramburger of Nourish Therapeutic Yoga, who has been offering these classes to our community throughout this year. We hope to see you there!

The whole class will be lying down and can be done from bed.
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Find the time in your time zone here:

https://www.timeanddate.com/worldcl...d+Movement+Class&iso=20241115T14&p1=263&am=30
 
From #MEAction:
You’re Invited: The Beth Mazur Innovation Prize Fundraiser

https://www.meaction.net/2024/11/01/youre-invited-the-beth-mazur-innovation-prize-fundraiser/
#MEAction website said:
You are cordially invited to The Beth Mazur Innovation Prize Fundraiser on Wednesday, November 13th at 2pm PST/5pm EST.

Beth Mazur, who co-founded #MEAction was a kind and compassionate human being. She cared deeply about the ME and the Long COVID communities. She also cared deeply about innovation, new creative ways to solve problems that haven’t been solved.

Before Beth’s passing, one of the things she was focusing her time and energy on was the development of a scientific prize for ME research. The idea was to reward new advancements in research or medical treatments, in order to encourage more scientists to the field and amplify good achievements that benefit people with ME. Prizes are common in other disease spaces and ME needs and deserves the same kind of attention.

Because of Beth’s devotion to a scientific prize for ME and of her hope that innovative ideas would change the ME landscape, #MEAction has decided to launch the Beth Mazur Innovation Prize.
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This news item was posted on Oct. 10th but while I saw some mention of this on other threads I don't think it ever got posted on this thread (my searches here didn't find anything).

From #MEAction:

Urgent Action Needed: Demand NIH Fund the ME/CFS Research Roadmap!

https://www.meaction.net/2024/10/10...-demand-nih-fund-the-me-cfs-research-roadmap/
#MEAction website said:
#MEAction is sending an urgent letter to NIH Director, Dr. Monica Bertagnolli, demanding that the NIH fund the ME/CFS Research Roadmap.

The roadmap was developed by a working group of foremost experts on ME, individuals with lived experiences of ME and advocacy organizations (including #MEAction), and presented at an NIH council meeting this past May. The roadmap outlines how to advance ME/CFS research with a focus on delivering clinical trials.

Here’s the problem:
The NIH has dedicated ZERO dollars to fund this critical roadmap. The proposed budget for ME/CFS research in the upcoming fiscal year is only $13 million – not even enough to fund half a clinical trial. Meanwhile, our community has exploded with the pandemic with as many as 10 million people now living with ME/CFS in the U.S. today.

We need your support now to show that our community demands action. Please join us in signing this letter to NIH Director, Dr. Bertagnolli, urging her to fully fund the ME/CFS Research Roadmap and make real strides toward treatment and relief for millions.

Here’s how you can help right now:
  • Sign our letter urging the NIH Director allocate funding to execute the ME/CFS Research Roadmap.
  • Share this petition and our social media posts with friends and family to spread the word. Use the hashtag #FundMEroadmap to amplify the message.
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I know they are still looking for signatures because there have been posts on social media over the last couple of days.

Note: The link above is for US signees. There's a separate petition link for international signees.


EDIT: This link for US signees might be a better one for sharing on social media (different format)

https://win.newmode.net/fundmeroadmap
 
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I have not watched this video yet, just happened to see it listed on the #MEAction YouTube channel:

The Voice of the Patient Panel - #MEAction Georgia


Summary from YouTube said:
In a first-of-its-kind event, #MEAction Georgia partnered with the CDC and Emory University’s School of Nursing to host a Voice of the Patient panel discussion. MEAction Georgia advocates talked about their lived-experience with ME/CFS and Long COVID. The panel includes a person living with ME and two caregivers.

Note to listeners: We apologize for the poor sound quality. Also, during the Q and A, a comment from the audience has been omitted due to misinformation. The reply from long-time ME advocate, Jes Gordon was kept in its entirety because the stigma must end.
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There is a transcript but I believe it was automatically generated, no human editing or proofreading, so probably full of errors.
 
#MEAction & Mayo Clinic Projects Continue – New Grant Awarded

https://www.meaction.net/2024/11/18/meaction-mayo-clinic-projects-continue-new-grant-awarded/
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#MEAction website said:
Given the rapidly changing landscape at the federal level, we recognize that the road ahead may bring some changes for patient advocacy.

Even in this evolving environment, we’re excited to share some positive news: #MEAction and the Mayo Clinic have been awarded the Sigma 2024 American Nurses Credentialing Center Evidence-Based Practice Implementation Grant awarded by The Sigma Theta Tau International Honor Society of Nursing (STTI).

We are also collaborating with Dr. Nisha Mathews, from University of Houston Clear Lake, Texas.

This grant will support our efforts to transform nursing-led education and create resources that truly meet the needs of ME/CFS patients at Mayo Clinic Rochester and beyond.
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New episode for Chronically Complex podcast, Episode 9: The Pillow Writers:

https://www.meaction.net/chronically-complex-meaction-podcast/

#MEAction on Bluesky said:
We're pleased to announce our next episode of Chronically Complex podcast is available Jaime & Steven sit down with Pillow Writers, Bobbi Ausubel, Ann Greenberger, & Laila Solaris to discuss the group's first anthology, Near-Life Experiences. Plus a giveaway!

Pillow Writers Anthology 1: Near-Life Experiences is available now at Amazon in e-book, print, and audiobook formats. All proceeds from the sale of this book go to #MEAction. Thank you, Pillow Writers!

The Pillow Writers are an international ME/CFS writing group. They are a very friendly online group that meets to share thoughts and feelings on any topic, including, but not limited to, experience of chronic illness. Learn more: https://pillowwriters.wordpress.com/

This episode is available now and we can't wait for you to hear it! You can listen on Apple Podcasts, Spotify, Audible, or wherever you prefer to listen to podcasts. Don't forget to rate Chronically Complex and leave us a review!

GIVEAWAY! One lucky winner will receive a free copy of the paperback version of the book & another will receive a free copy of the audiobook. To enter, listen to the episode, then email podcast@meaction.net by December 15th with the subject heading "Pillow Writers Giveaway."
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Bluesky thread has more details = https://bsky.app/profile/meactnet.bsky.social/post/3lbkjf5gqec2t
 
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New post (January 23) from #MEAction:

"The Year Ahead"
#MEAction said:
As we embark on the new year, we are excited to share updates about #MEAction’s advocacy projects and community programs with you!

While we focus on advancing support, research, and treatments for people with ME, we’re also closely monitoring changes to public health systems under the incoming administration, and will pivot as needed to fight for our community.
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Some of the topics covered in this article:
  • Ways to get involved with #MEAction
    • Volunteer groups, state chapters, support groups, pillow writers
  • Science and Med Ed Projects
    • Mayo Clinic project
    • #TeachMETreatME project - Medical education
    • Social Services and Care - Canary Corps pilot project
 
A new project, Share the Love, has been announced for Valentine's Day (Feb. 14):

Instructions can be found in this Google doc:

https://docs.google.com/document/d/1_MZwPgBN4gpGCNuQ8jILo4_GBH80h9NAWdjieDJDwA0/edit?tab=t.0
Instructions said:
#MEAction hopes to spread a little love on Valentine’s Day and we would love your help!

We hope to put together a video showcasing the words that illustrate the love within this community. To do this we are asking that individuals take a photo of a heart with 1-3 words that describes why you love the #MEAction community so much.

The heart can be drawn, cut out, painted, designed on a computer…there is not a specific way the heart has to be created, so please do whatever your own heart fancies. Only requirement is that the word(s) is easy to read.

Then take a picture of the heart. You can hold up the heart and be in the photo or you can take a picture of just the heart. Doing a computer design–a screenshot will work, just as well.
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Deadline for submission is Feb. 7th.

Upload the image using this link:

https://airtable.com/app8knYWq7e0wk4Ij/pagea0aAmI72ZYQDf/form

Announcement on #MEAction's Bluesky account:
https://bsky.app/profile/meactnet.bsky.social/post/3lgxz7lp5lc2s
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ahimsa said:
A new project, Share the Love, has been announced for Valentine's Day (Feb. 14):

Instructions can be found in this Google doc:

https://docs.google.com/document/d/1_MZwPgBN4gpGCNuQ8jILo4_GBH80h9NAWdjieDJDwA0/edit?tab=t.0


Deadline for submission is Feb. 7th.

Upload the image using this link:

https://airtable.com/app8knYWq7e0wk4Ij/pagea0aAmI72ZYQDf/form

Announcement on #MEAction's Bluesky account:
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For me, this is just so far from what we need charities to be doing
 
Cinders66 said:
For me, this is just so far from what we need charities to be doing
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I suppose it is important to bear in mind how diverse a group of people we are. There are parts of our community I find alienating, for example the MEA UK Christmas hamper project for valued carers, seemed to be valued by a strong contingency of the membership.

Comments on MEA hampers moved to MEA news thread
 
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